Survivors! In the syndrome, an essential enzyme GT is absent in the liver at birth. (Source: Thinkstock Images)

A four-year-old Pakistani boy, who has been suffering from a rare medical condition, recently received a new lease of life after undergoing a liver transplant at a hospital in Delhi. This is the second such operation to have been undertaken in the Capital over the past year. The other was a 13-year-old child from UAE with the same condition – Criggler Najjar Syndrome (CNS).

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Khalid Mohammad from UAE and Abdul Ahad from Pakistan suffered from CNS, and recently underwent the transplant at Apollo Hospital in south Delhi. In the syndrome, an essential enzyme GT is absent in the liver at birth. This deficiency results in toxic form of bilirubin to rise in the blood to a very high level, which can cross into the brain and produce irreversible complications, the hospital said in a statement.

To prevent brain damage and hearing loss from this condition phototherapy (treatment by the use of special light) is needed for 14–16 hours a day.

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As the children suffering from this condition grow older, their skin gets thickened and the light penetration decreases making phototherapy less effective. To survive, they need to remain under the phototherapy unit, bearing intense light and heat, for much of the time in a day.

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“Khalid received a part of his father’s liver and Ahad received 30 per cent of his mother’s liver. Ayanveer Singh from Kapurthala suffering from CNS had undergone a liver transplant in March last year when his mother donated a third of her liver. “After a liver transplant, there is no need for phototherapy as the new liver has the GT enzyme. The two children are now cured of this rare syndrome, which affects one in 10 lakh of population globally,” said Dr Anupam Sibal, group medical director, Apollo Hospitals Group, and senior paediatric gastroenterologist and hepatologist, Indraprastha Apollo Hospitals, in a statement released to the media.

Dr Sibal said the two children have been cured of a high-degree of jaundice. “There were a few challenges, as putting in a healthy liver in such patients, lead to blood clotting,” he added. “With the new liver, both children have received the enzyme they were not born with and their eyes are pearly white. They have finally bid adieu to their constant companion – the phototherapy unit,” Dr Sibal said, adding that they have performed more than 2,800 liver transplants in patients from India and 40 countries till date.